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Advice please, how do you get diagnosed?

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Lyme Disease
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Posted 6/16/2014 8:37 PM (GMT 0)
No diagnosis yet. Brain MRI and EEG are normal. My Lyme IgG is .91 so technically negative? But equivocal? I went for my follow up and my neutrologist never said a word about this. Look at my results and I'm confused. My CRP has also been high for a few years now, and it's up to 9 at this point, started around 6. I've had the worst symptoms (brain fog, dizziness, disorientation, intolerances to foods, muscle/joint pain, extreme exhaustion). I still work FT and really make an effort to lead a normal life, but I am so tired when I get home. It impacts my relationship with loved ones.

Should I push for more testing given the blood result, CRP, + symptoms? Or is .91 really truly a negative result?

I was tested for Lyme 3 years ago and did not have a result nearly this close to equivocal. At this time I just had high CRP and low Vitamin D.

Other blood results check out (some slightly high cholesterol)

Posted 6/16/2014 8:38 PM (GMT 0)
Was it a test through Igenex you had?

You need to see a LLMD...not a neurologist.
Posted 6/16/2014 11:29 PM (GMT 0)
Thanks! It was routine blood work with a few tests added in to see if there were any abnormal results. This is the first time I've had the Lyme test elevated like that. So next step is the LLMD I see.

I'm very much in the beginning stages. I'm just wondering if it's enough of a concern to go to one if my result was .91
Posted 6/16/2014 11:36 PM (GMT 0)
If you didn't get the test done by Igenex, i would recommend that you do that.
Posted 6/17/2014 1:01 AM (GMT 0)
I don't see any replies to your post about finding a LL doc...so i will bump it up so it doesn't move to page 2.
Posted 6/17/2014 4:42 PM (GMT 0)
After ten years my blood work still comes back basically normal and yet I can be so sick. Not until late last year when had CD57 test did a result finally show suppressedimmune system llikely from lyme.
Posted 6/17/2014 6:50 PM (GMT 0)
Girlie, thanks for bumping my thread!

I had no idea that Lyme was
(1) a controversial diagnosis and (2) so hard to diagnose

Another quick question - what is so special about an LLMD versus a normal MD (say a rheumatologist?)
Posted 6/17/2014 8:01 PM (GMT 0)
Hello Cappuccinocurls , How has your progress been on getting diagnosed? How long do you think you've had it? I am concerned that I also have it and would like to hear what your experience has been like. I have had many health complications for 15 years but didn't understand it, short term memory loss ever since age 11, major school issues, then seizures and migraines/vomiting every week, plus spinal cord issues, passing out, constant stomach problems. It was all a mystery to me, but Then recently I saw a documentary "The Punk Singer", where at the end a woman revealed her health struggles --- I found I connected with every symptom, but what really got me was her facial expression and body movement in one clip, the way her face twitched and she had trouble with speech it looked just like what ive been experiencing, then at the very end she said it was Lyme. Lyme hadn't occured to me until I saw that documentary. But I had an infected tick bite as a child (bullseye rash) and was not allowed to see a doctor then. Now I wonder if I should investigate this and try to find treatment. What do you think?
Posted 6/17/2014 9:27 PM (GMT 0)
A regular MD usually not experienced, or knowledgeable about Lyme disease.
A LLMD or LLND will not just use test results for a diagnosis...they will also look at your symptoms.
You could have a negative test, but still have Lyme disease.
The best test is Igenex lab - if i were you I would have the test done, as well as find yourself a LLMD.

Some Lyme patients have had several tests done because the first ones have come back negative...and then they get a positive test after.

Many LL docs treat on symptoms (clinical diagnosis).
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